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"Is love available even here?"

A wise friend of mine has this tattooed on her wrist. It reminds her of one of the most fundamental questions we must ask ourselves when life goes to pieces and hope seems so far away.

This question has come to me often in our many hours in the pediatric oncology clinic. Of all the children we see, I know the inescapable truth is that some of them will not survive. There will come a day in the not-so-distant future when their bright smiles, indomitable spirits, and their endless courage will shine only in memories.

Cancer is a cruel and evil monster. You cannot bargain with it. Its sole intention is to take over and kill. We live in the presence of an unfeeling, relentless enemy. We fight it down to the ground with our bare hands. Some of us will lose. It threatens every day to tear our lives to dust.

But in the face of it, we can ask ourselves this question. Even in the midst of terror and the very end of hope, we can ask it.

Is love available even here?

I see parents altered down to their DNA by fear. They have emptied themselves of everything they have to save their children, and have become shells of what I imagine they once were. Yet they carry on, hunched over by the weight they bear, determined, going on pure instinct and love. Covered in cracks, they threaten to shatter at any moment. But somehow, they never stop; they never quit.

I saw a dad bent low, exhausted, and leaning from shouldering the weight of the world, pulling his frail daughter in a red wagon with one hand and her IV pole in the other. He took step after step, lap after lap on the pediatric oncology floor. She was too weak to stand and could barely move in the wagon, propped up with blankets and pillows. I wondered whether she was a prophecy of our son’s future, and her dad of mine. But somehow, flowing from his hand, to the handle, to the wagon, and into her body was a wordless spirit and bond that would bear itself to the edge of doom.

Is love available even here?

One family had been in that hospital for six months. They lived in a time outside of time, a place outside of place. Their entire universe had shrunk to a couple thousand square feet of hospital floor. Days were measured not with hours, but in good or bad, progress or setback. But somehow, they reached out to us, perhaps seeing in us the same terror they have seen in their own mirrors. They offered us encouragement, told us we would be strong enough, and then they returned to their child’s room having worn that path bare.

A little girl of barely two, thinning hair and a nasal gastric tube came toddling into the play area and settled in next to Dale Jr. They played in a sort of slow motion. Their IV poles bumped into each other. They smiled at each other and seemed almost like kids again, like nothing bad had ever happened. Her mom laughed, and we laughed. Seeing our kids happy now takes on infinite layers of meaning. In those moments, the future stops, balanced between joy and terror. But somehow, our children hold hope for us within the present moment when we can barely breathe.

Is love available even here?

One child wrapped himself around his IV pole and stood on the base while his mom pulled him along. He was too physically weak to walk himself. He was pleased to be upright and moving briskly around the clinic again after his body had succumbed so much to the chemo. And his mom was happy that he was happy again. Everything around us remains unknowable. But somehow, in that moment they found joy wrapped around the same instruments that ravage his body.

Two little girls, both bald from the chemo and swollen from the steroids, sat at the playroom table, each with IV poles standing like prison guards next to them. Bags of fluids dripped slowly into their arms, chemical warfare tearing their bodies down to scorched earth. Each day, they balance on the edge of a knife between death and the chance to rebuild their lives from the depths of their merciless cancer. But somehow, neither paid the IV poles or chemical weapons any mind. These things had become so much a part of their lives that they sometimes melt into background noise.

They sat at the table together playing Candy Land. They are about my son’s age. They laughed with each other again and again as the game went on. They were once strangers, but somehow these unimaginable circumstances led them there to that game at that table on that day where they could laugh and be kids again.

Is love available even here?

I saw the parents’ ashen faces. The staff paused and parted and give them space. I knew what this must mean. They faced the unspeakable question. There are no words anyone can offer. There can be only silence. But somehow, in the pausing and parting, the standing by and with, they were surrounded by those who will watch and wait, stand vigil through this total darkness until the day comes when it is time to speak again.

Is love available even here?

My own beloved son says, “The medicines give me bad dreams. I am scared of ghosts, monsters, and bad guys. It started when I started taking the medicines.”

He pleads with me, over and over, “Daddy, when can I stop taking the medicines? Daddy, please can I stop taking the medicines?”

I feel broken. No, it’s so, so much worse than that. I can’t find the words. All I can say to him over and over is, “I’m sorry. I’m so sorry.”

He covers himself in band-aids because he feels torn apart. He hides the king and queen deep inside the castle and surrounds them with knights and superheroes of every kind until there’s an impenetrable ring encircling the castle. This is how he speaks of his terror.

He’s 5. This shouldn’t be happening to him. This shouldn’t be happening to any of them.

We learn to give him chemo at home ourselves to save trips to the clinic. I take extraordinary precautions to not spill a drop of it or get any on myself, yet I am injecting the entire contents of it directly into his chest. I have to suspend my emotions, tell myself this is the only way to save his life. He lays there, his vibrant energy flowing out as the chemo flows in to replace it. It flows into the cracks in his body and soul and pushes them apart even farther.

I spend the whole week of his treatments between the verge of tears and crying, floor-pounding rage. I hide my emotions from him. He is already bearing too much. His play therapist believes he is suffering from traumatic stress. He worries constantly about the house catching on fire or bad people breaking into the house, neither of which has ever happened. He locks the doors of rooms he’s in, even if we are with him.

He knows enormous words like antibiotics, histiocytosis, and heparin when he should be telling jokes about bodily functions with the other boys.

Is love available even here?

Love is the only thing that can remain unbroken even against the full fury of these horrors. We have been surrounded by people who feed us when our bodies are crushed and weary. We have been enveloped in the thoughts and prayers of family, friends, and complete strangers when our faith and hope in the future have faltered. Their acts of kindness have flowed through the empty places in our lives and renewed our faith in love and compassion.

These stories and countless like them will go on. There are no tidy, happy endings. When we love someone fiercely and completely, we risk losing everything. We risk devastation, and we have so little control over any of it.

But somehow, we choose to love regardless. It is what makes us human. It is what gives our lives meaning and beauty.

It is why love with always be available, even here, even anywhere, whatever may come.

I do not know how it is possible to survive what feels un-survivable, however your words portray courage and love at their rawest moments. I pray that your entire family continues to be lifted and filled with courage, love and God’s spirit. And I so pray and hope for healing for you all — physical, mental, emotional, and spiritual healing. Your journey is heartbreaking and inspiring, and I pray that in the future you can move from constant fear to hope and peace. Your son has now become his own super-hero . . . In fact, that whole hospital is filled with them!

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If you went looking for something on my previous blog - Both Hands and a Flashlight - you might have been a little surprised to end up here. After much deliberation, I've decided to combine my two sites. So my new home is here at I Am An Autism Parent. Welcome!